Injecting Sense

"Have common sense and ... stick to the point."
⎯ W. Somerset Maugham

Wednesday, June 28, 2006

THE ABSURDITY OF BEING TAKEN TO TASK FOR WHAT ONE DOESN’T SAY

I got a lot of emails in the last couple of days telling me that I was being taken to task by a friend. I use the word “friend” without any touch of irony, as that is what I have considered Kevin Leitch since I started blogging. Despite rather marked differences of opinions on some of the core issues I write about, and even words by either of us that the other would consider lapses of judgment, we have been able to maintain an air of cordiality between us.

In the last few months, Kev and I have not really communicated. That is probably a sign of the decline in the level of discourse in the on-line world of autism that we have both moved away from the center. I make no apologies for expressing my opinions honestly, and I certainly don’t expect Kev to apologize for doing likewise. Nevertheless, I think Kev crossed a line with a recent post, entitled Indefensible And Unprotested.

The point of Kev’s post is that some of us, including organizations and individuals, have not spoken out enough on the killing of Katie McCarron and the use of extreme aversives at the Judge Rotenberg Center.

I certainly understand the anger over the senseless and apparently criminal killing of an innocent child. In the only post I felt it necessary to write about the McCarron tragedy, I tried to make it clear that in the absence of evidence that Karen McCarron was unable to understand the moral consequences of her act ⎯ not just that she thought that killing her daughter might be in some way justifiable, but that she had a complete lack of understanding that killing is wrong ⎯ I would consider this to be murder. And I expressed concern that there would be a use of this unspeakable act to further agendas:

A child is dead because she was unable to defend herself from the one person she should have been able to trust more than anyone. She cannot defend herself from being used by any of us to further our various causes.

Those words were sparked by the announcement that the Autism Hub bloggers were going to devote a day of posts to Katie McCarron’s memory, but they were also intended to be a plea to those on all sides of any of the issues that divide us. I have to say that many of the Hub posts were quite respectful and moving; others veered into agendas. Those that used the death to make a point were not alone, though, as many in the press and in various corners of the web tried to connect this senseless act to a “lack of services.” That, as Katie’s grandfather, Mike McCarron, has pointed out in several places, is rubbish. Equally wrong, though, are efforts to use this death to make any other unrelated point. In his post, Kev states:

. . . To besmirch the memory of Katie McCarron by trying to empathise with her murdering mother and to try and absolve her and by implication blame the mainstream medical community is appalling.

In fact, the reverse is almost certainly true ⎯ the utter hopelessness that groups such as Autism Speaks like to foment are much more likely to have led to any depression Katie’s murderer might’ve had. And if she felt that vaccines caused her daughters autism then she long ago crossed the line into quackery. In this case, fatal quackery. There is still absolutely zero evidence that vaccines cause autism. Anyone ⎯ and I mean anyone who has had a hand in perpetuating that myth bears some responsibility for the murder of Katie McCarron.. . .I want to clue these killer parents and those parents and groups who ‘understand’ killer parents into something: Your child is not your property. You have no rights over them. You have an obligation to parent them, love them, feed them, clothe them, teach them and let them be who they are. When you have a child, you put yourself last. If your career suffers ⎯ that’s not their fault. If you can’t go out as much as you used to ⎯ that’s not their fault. If money is a problem ⎯ that’s not their fault. Stop transferring your unhappiness about the way your life has changed into excuses for killing, or understanding the killers of, children.

As Kev well knows, and anyone else who has bothered to actually read what I write should know, I happen to believe that vaccines played a causative role in my son’s autism, and I believe very strongly that I am doing the right thing in trying to reverse the effects of toxins that have triggered that condition. But I agree that my child is not property. I have no right over him, although I do have the right and obligation to make decisions on his behalf. I carry out my obligation to parent him, to love him, to feed and clothe him, and to teach him. He is who he is, and any recovery we may achieve from autism will not change that. And he will remain who he is ⎯ a loved and nurtured son ⎯ in the unlikely event his recovery ceases tomorrow. I put my son’s needs ahead of mine. My career has suffered; I don’t go out very much; money is a problem; and I have never blamed my son for a moment. That’s not what this is about, and it’s wrong to imply that it is.

Mr. McCarron left a comment on Kev’s blog that reads in part:

. . . Katie was murdered. Her situation is not about bio-meds vs. ABA, she was not given the opportunity to have any of those work or not work. People can talk all they wish about the stress of being a care giver. Katie’s care givers were my son and my wife along with a number of other people in North Carolina, they cherish every moment they had with her.

No little child should be murdered! That can’t be rationalized, excused or glossed over in any way. People speak of the “toll of autism”; I speak of the “toll of murder”. There will be a trial; the court will hear the truth.

In his grief and out of the purest of love, Katie’s grandfather is speaking the absolute truth. I cannot conceive of any possible justification for this beautiful child being killed. And to imply that everyone who thinks vaccines helped trigger their child’s autism is to blame for an evil act is just plain wrong.

I’m still unsure if Kev is mad because I didn’t single out for criticism the people who wrongfully use a child’s death to further some vague agenda about lack of services unrelated to an unspeakable act, or if he is really mad that I preemptively asked that no agendas be furthered.

With regard to the Rotenberg Center affair, Kev said this:

The NAA who regularly (and falsely) denounce good science and promote bad released a damp squib of an online petition and then fell totally silent on the issue.

Safe Minds? Nothing.

ACHAMP? Nothing.

These, don’t forget, are the people who call themselves the autism community. Seems to me like they care about one issue and one issue only.

And how about the anti-mercury bloggers? The grass-roots ‘autism community’.

Adventures in Autism? Nothing.

Injecting Sense? Nothing.

Okay, let’s start with the National Autism Association. Although I can’t say for sure who spoke out first, I read the NAA press release before I saw Kev write anything about the situation. Here’s what the “damp squib” said:

“We can’t allow this to continue,” says Wendy Fournier, President of the National Autism Association. “There has to be a better way of addressing behaviors associated with severe autism and related disorders.”

The national group says regulations need to be in place to prevent aversive therapies. “We’re interested in talking to facilities such as the Rotenberg Center, and are willing to help in any way we can to replace these cruel therapies with something less aversive,” says NAA Executive Director Rita Shreffler. “These children simply cannot be subjected to these methods, and finding a better way should be the priority of these types of treatment centers.”

Maybe Kev doesn’t think the NAA used strong enough language, but I think they made it quite clear that there is no place for cruel aversives to be used in any autism facility.

As for SafeMinds and A-CHAMP, those organizations have a narrower purpose and are right to focus on their mission as organizations. That is not to say that individuals affiliated with those organizations do not hold the same views as were expressed by the NAA or by Kev.

I might add that most of the commentary I have seen on the EoH list has been quite adamant that the methods used at Rotenberg were unacceptable. I know Kev monitors the list, as he is never shy about mining comments he finds offensive to post for the world to see. Yet he now is creating the impression that all anti-mercury/biomedical parents must think aversives are just fine and dandy. (I don’t know that this is his intention, but it is surely what the tome conveys.)

As for me, I must first point out that the fact I did not find it necessary to state support for an obvious conclusion (i.e., torture is bad) does not indicate I hold a contrary opinion. But since it apparently must be said for me to maintain any kind of status as a blogger, yes, I am disgusted by the reports of what passes for “treatment” at the Rotenberg Center. I likewise think the Nazi movement was (and is) evil, that Idi Amin was not so nice a person, and that things are somewhat hairy in the Middle East these days. I didn’t think I needed to say any of those things, but apparently there are litmus tests to worry about. As Ian Parker pointed out in his comments to Kev’s blog, this attack is odd in that it isn’t based on what anyone has said, but based on what isn’t being said.

For some reason, Kev ⎯ whose site gets more visitors in an hour than a get in a day ⎯ thinks I hold myself out as representing “the autism community.” I’m part of an autism community, but I have never held out my opinions as being anything but my own evolving views. Why would Kev think otherwise? The answer is nothing short of mind boggling. When a fellow blogger tried to point out that nobody was trying to represent themselves as being a community spokesperson, here was Kev’s response as it related to me:

I recently read a blog posts of Wade’s where he described how ‘Injecting Sense’ stickers were being handed out at Autism One. I don’t know how much more one could do to promote onesself as a community venture than hand out what are to all intents and purposes ‘membership badges’.

I’m not sure how well the phrase will translate to the Queen’s English where Kev lives, but down in my neck of the woods, the appropriate response to such absurdity is “Say What?!?!?” For those who may have missed the explanation, a friend showed up at Autism One with a handful of cute little stickers with a blog logo on them. A few friends wore them in good humor, but we didn’t go around handing them out to one and all; we didn’t even have that many (although I still have a couple if you want me to send you one Kev). It was not intended to promote the blog as a “community venture.” Hell, if we had tried to hand them out en masse, I fear what we would have heard a lot of would have been, “Badges? We don’t need no stinking badges!”

That being said, a comment at Kev’s blog by “Dad of Cameron” correctly points out that I have used the first-person plural in a context in which I speak of commonly-held beliefs in the anti-mercury and biomedical sub-communities. I think that’s a fair comment in that I occasionally refer to broad opinions that define us as a sub-community (and please note that I am intentionally using the “sub” prefix; no group can claim it is the autism community). That does not mean I speak for all who fall into those sub-communities or that everyone agrees on all particulars. And it certainly does not obligate me to comment on every single issue.

No, I have never had ambitions of being the arbiter of community standards or setting a community agenda. But it strikes me that someone who is taking others to task for not expressing the “correct” views is trying to set the agenda and the standards for opinions. That is not the Kev I thought I knew, the Kev who relished a good debate and who was able to acknowledge he did not have all the answers. But that is the Kev who wrote that most recent post.

And Kev is not alone. I, and others as well, have found ourselves to be increasingly under attack in various quarters. After I left a comment (and to be sure, it was a very pointed comment) on another blog, someone noted that it was a very aggressive comment for someone who tried to project an air of balance. My immediate response was that balance is highly overrated. By my nature, my upbringing, and especially my training, I am inclined to see both sides of an argument, but that does not mean my opinions are neutral.

My inclinations have led me in the past to seek a dialog in the hope of focusing on what we all have in common. If we can define those commonalities, we are far more likely to listen to each other on the issues on which we disagree. Kev, among many, was active in that dialog, and for a while the discussion was productive. For some reason, however, some feel that my willingness to explore the possible commonalities we have was an effort on my part to hide the fact that I am anti-mercury, that I am pro-biomedical, that I am a “curebie.” Those people seem to feel that it has only been recently that my “true feelings” on these subjects have emerged. Whoever thinks that needs to go back and read some of my earliest posts. I have never hidden my views, which have evolved but have never been neutral.

That I recognize autism to be a broader problem than mere mercury poisoning does not mean that I have not always believed thimerosal to be the single greatest contributor to the autism epidemic. That I generally avoid most discussions of specific methods of treatments does not mean that I do not believe many such treatments have a place in the biomedical world. But discussions of specifics do little to advance the policy discussions to which I am most drawn. Autism is a unique condition to every autistic individual. There are no one-size-fits-all responses.

That dialog has fallen apart, in large part to the deaths of innocent children: first Abubakar Tariq Nadama and now Katie McCarron. The other factor leading to the widening rift was the Autism Speaks video (about which like so many other issues, you will find a great diversity of opinion within the anti-mercury/biomedical sub-community). If there is a central theme to the growing discord, however, it may be summed up in perceptions about one word: acceptance.

Although I would not ascribe this opinion to all who embrace the ideals of the neurodiversity or autistic pride movements, many seem to feel that parents turn to biomedical interventions because they can’t accept their children. That view was recently expressed in an NPR report on the autistic pride movement, in which Jim Sinclair stated:

“What the rest of the world needs to know about autism is that it’s not something that can be separated out from the person, it’s part of the person. And so you cannot meaningfully say I love my child but I hate the autism.

“That’s like saying I love my child, but I hate that she’s a girl and I’d like her to be a boy instead. So when you’re saying all of these things about how terrible it is that you’ve lost a child and how much your child is a disappointment to you, and how much that you wish you had a different kind of child, we’re hearing that. And what we're hearing is that you don’t want us and you want someone else instead.”

Again my response is “Say What?!?!?” (Truth be told, I had another two-word phrase in mind, but prudence dictates a milder response.) Nobody ⎯ and I mean nobody ⎯ has either the right or the ability to define my relationship with my children.

I accept my son and love him for who he is, and I would accept and love him if I had no belief that his autism could be cured/healed/mediated/reversed, etc. I have never been embarrassed to be seen with him or be identified as his father. I learned long ago that children ⎯ autistic and neurotypical alike ⎯ will follow their own path in life, so it is best not to have your own plans for their future.

I accept another truth though. Autism can be (not always is, but can be) a disability. It can stand in the way of an individual using all of the gifts with which he or she has been endowed. If that is the case, it is no crime to attempt eliminating the disabling aspects of autism.

I don’t buy into any crap about the hopelessness of autism. As the NAA puts it: “One thing’s for sure, autism is not a hopeless diagnosis.”

I hope that in the near future a meaningful and respectful dialog can resume.

Monday, June 26, 2006

THE INSPIRATION OF LOVE

A column in The Times-Picayune, the local daily newspaper, caught my eye. The writer, Lolis Eric Elie, wrote about two members of the Marsalis family of New Orleans. Even the most casual music fan knows of the musical genius of Wynton and Branford Marsalis, and you might also know that their father, Ellis Marsalis is a renowned Jazz musician and educator. This is a family that has always demonstrated hearts as big as their musical talent, but Mr. Elie’s column wasn’t about Wynto, Branford, or Ellis (at least not directly). Instead, he wrote of another Marsalis brother, Delfeayo.

Delfeayo Marsalis has had an outstanding career as a musician, and is certainly well known in his hometown and among jazz fans throughout the world. If he is less famous than his brothers, it is probably due to Delfeayo’s decision to live in New Orleans rather than go to New York, Los Angeles, or some other center of the music business.

All of the Marsalis family are known for “giving back” to whatever community they are a part of, and Delfeayo is no exception. Mr. Elie shines a light on the annual summer arts camp Delfeayo Marsalis runs for kids in New Orleans, something the city needs this summer more than ever. And Mr. Elie also shines a light on part of Delfeayo’s inspiration for wanting to help others: his brother, Mboya.

The fifth of Ellis and Delores’ six boys, Mboya has autism. While his other brothers played music and basketball, Mboya mostly stayed home, his development limited by the disease.

“A lot of what I find missing in our society is a lack of compassion. Living with someone that you love and care about who has a handicap inspires that type of compassion and understanding,” Marsalis said.

“I started working with kids at Children’s Hospital when I was in high school. I’m sure that had something to do with Mboya. I figured I could help out some kid in need,” he said.

I know exactly what Mr. Marsalis is saying about the lack of compassion. Before learning about the world of ASD, I probably would have attempted compassion and understanding, but I don’t think I would have actively sought to understand it. That’s to my shame. But having an autistic child certainly brings understanding. And I have not been shy about educating family and friends.

Loving someone with autism inspires a lot of feelings and a lot of responses. Lately, the level of discourse among the greater autism community has grown quite nasty. Some things have been said that I will probably have to write about in the next few days when I get a chance (blogging remains a distant priority after my family and my career). Today, though, I will take comfort in the response of Delfeayo Marsalis to his brother’s autism.

**************************

UPDATE:

The Marsalis family addressed a letter to the editor of The Times-Picayune, in response to the column I discuss above. I thought it appropriate to include their letter as a post script:

Lolis Eric Elie’s column on Delfeayo Marsalis, our fourth son, and his Uptown Musical Theater was very enlightening and inspiring. However, his reference to our fifth son, Mboya, as having a “disease” is a misnomer.

Autism is not a disease. At present, autism is considered a neurological disorder and, until further research, will remain somewhat of a mystery.

With much courage, love, patience and dedication, we have seen our son slowly improve without the use of medication. We have been on a “long and winding road,” to which we are sure all parents of autistic children can relate.

Saturday, June 24, 2006

NOT THIS YEAR

Sources of funding add too much fuel to the fires in the debates over vaccines or thimerosal as possible triggers of autism. The vested interests of vaccine manufacturers and government regulators deprive any study they may fund of credibility among those of us who believe there may be a link. On the other hand, those that are inclined to discount any connection between vaccines and autism will automatically disbelieve any study funded by SafeMinds, Generation Rescue or any of the other advocacy groups. What we all need are studies funded by entities that aren't tied to a specific agenda on the issue.

Autism Speaks could be such an entity, but it has yet to earn the trust that will be needed to give its work credibility on both sides of these issues.

When Autism Speaks first came on the scene, its arrival was met with skepticism because its co-founder, Bob Wright served as the chief executive for a business (NBC) that derived advertising revenue from the pharmaceutical industry. Eyes were set rolling even more when Autism Speaks merged with and took over the National Alliance for Autism Research (“NAAR”) in a deal that had the new organization “adopting” NAAR's scientific advisory board and scientific advisory committee. Because NAAR had long earned the reputation of not wanting to look beyond simple genetics in studying autism, there was little room for optimism that Mr. Wright's initiative would do anything to help resolve the controversy.

But while it was still discussing the merger with NAAR, Autism Speaks issued a policy statement noting the still-unproven hypothesis of a connection to thimerosal, and it noted the need to further explore all environmental exposures:

The thimerosal question has highlighted a number of points whose further consideration should significantly advance autism research. First, although genes are believed to play a major role in autism, more attention needs to be paid to mechanisms where genes exert their influence by altering susceptibility to environmental exposures and mechanisms by which environmental exposures may alter gene expression. Second, there is a great need, when studying environmental exposures, to find ways of identifying highly susceptible individuals. And, third, because autism is a complex condition possibly having multiple causes, researchers need to find reliable ways to distinguish autism subgroups with distinct etiologies.. . .

Autism Speaks plans to strongly support a multidisciplinary research agenda on environmental exposures and autism. We believe that projects acknowledging the role of gene-environment interaction and incorporating markers of exposure susceptibility and etiologic heterogeneity will be the most productive in the long-term. Given present knowledge, there is a fairly broad array of neurotoxic environmental exposures worthy of further study but, moving forward, the type and timing of exposures under investigation should continue to comport with emerging developments in autism neurobiology.

Thus, many of us hoped that Autism Speaks would step up and fund independent and credible research to help all of us move forward. And some day Autism Speaks may do just that, but not this year.

Autism Speaks issued a list of its Pilot Grants, in which it will dole out $5,600,000 to fund 50 projects over the next two years. Not one of the 50 projects directly addresses the question of thimerosal or vaccines, and none seek to examine the efficacy of the biomedical approaches so many of us use.

That is not to say that the studies receiving funding have no value. Most of the studies will add to the body of knowledge we need in areas like autistic cognition, visual processing, adaptive skills, the etiology of language deficits, sensory integration.

Other funded studies seem to be wasteful. Do we really need a two-year study, funded at $118,880, to detect and try to artificially eliminate body rocking and hand flapping? That seems to me to be the least of our worries. And while I'm sure that studying the impact of bilingual language exposure will yield interesting results, it seems to me that the $42,800 earmarked for that one-year study could have been spent better.

I count at least four studies on the role neuroligens play in autism. It's an important question, to be sure, but those studies, which are duplicative to a large extent, are being funded at the expense of other important questions. The same can be said for the over $223,000 to be spent over the next two years for two separate studies that will use functional MRI technology to measure cognitive changes during facial expression processing and social perceptions. Yet another two-year study will use fMRI technology to study visual motion processing impairments in autistic adults. (Indeed, fMRI must be the new toy of the moment as there are other studies using it as well. The other pervasive theme is the proliferation of studies trying to create an animal model for autism.)

One of the neuroligen studies is being conducted by Dr. Craig Powell at the University of Texas, who is also the recipient of another two-year grant trying to create an animal model for autism by studying a mutation of the PTEN gene. I'm sure Dr. Powell's credentials are outstanding, but so are those so many other fine researchers who might want to look into the questions Autism Speaks said they wanted answered.

The studies that may add something of substance to the issues of vaccine and mercury exposures, or environmental insults in general, are few. Dr. Ivana Kawikova of Yale has been awarded $120,000 for a two-year study looking at the role that inadequate immune systems may play in the pathogenesis of autism. Dr. James Briscoe received $59,948 for a one-year study of the impact of prenatal exposure to chemical tetrogens, including anti-seizure medications.

Another two-year study will look at neuroinflammation and the kynurenine pathway. How did this one get funded? I'm sure it had nothing to do with the fact it is being conducted by Dr. Michael Vogel, who just last year served on the panel that reviewed grant applications to NAAR.

I'm glad that someone besides Boyd Haley and the Geiers will be looking at the role of testosterone in autism. But the two-year study by Dr. John Gilmore at UNC (funded at a relatively modest $85,979) will look more at general influences testosterone levels may have on early brain development rather than the hypothesized synergy testosterone may have with particular environmental insults (i.e., mercury).

Two separate studies will look at abnormalities in glutamate reception and transmission, but neither will look at the interplay with environmental insults. Like so many of the researchers who are receiving the Autism Speaks grants, the focus will be solely on genetics.

Autism Speaks is a noble idea on the part of Bob and Suzanne Wright. I believe their intentions are good, and that they can do much good. Unfortunately, their vision has been hijacked by those who would rather stick their heads in the sand than acknowledge that other models for autism exist.

Debating the hypotheses of environmental triggers detracts from addressing the issues of what we can do to address the problem. The greatest progress will come after we have found out ⎯ with a reasonable degree of certainty ⎯ whether we are right or wrong in believing that vaccines and heavy metals played a role in triggering autism in so many of our children. Autism Speaks may yet surprise us all and be the organization that helps us determine the truth. But not this year.

Saturday, June 17, 2006

FATHERS’ DAY

I’ve written before about my father and the lessons of respect I learned from him. He was an amazing man who I continue to miss and think of every day of my life.

It’s ironic that I have always been so much in awe of one of the most approachable men to have ever walked the earth, but then again, irony was the story of his life. He was an intellectual who never left behind his semi-rural roots. He was a prolific author of scholarly works whose favorite author was Louis L’Amour. His gruff words could never conceal the tenderness of his spirit.

Dad was raised in Reidsville, North Carolina, a small tobacco town just north of Greensboro. Playing Center (at a time that meant both offense and defense), he was the first All-State football player to emerge from Reidsville High. After spending a few years at Virginia Tech (or V.P.I. as Dad always called it) on an athletic scholarship, my father left school to work heavy construction and played some semi-pro football on the side. There was talk of playing professional ball, and there were plans of staring his own construction company, but those plans and dreams were not to be.

When World War II broke out, Dad tried to enlist, but was repeatedly rejected because he was in a “vital industry.” He eventually talked his boss into firing him so he could join the fight, but irony, as ever, interceded. He was assigned to the Corps of Engineers working in stateside construction projects (primarily building airfields). Nevertheless, he worked his way up to the rank of Second Lieutenant, and found something to make him glad he was not sent overseas; he met and married my mother.

After much lobbying, my father was eventually assigned to a unit that was to be sent overseas to work in the European Theatre of Operation. While training with the platoon he was to bring over, Dad sustained a serious back injury, and he spent the rest of the war in military hospitals.

The back injury changed my father’s life for better and worse. He defied a prediction that he would be unable to walk within the following ten years, but he was not without constant pain for the remainder of his life. Although he often mentioned the pain, it was always in a matter-of-fact way. I never heard Dad complain about it or wallow in self-pity. He did what he could to make it more bearable, and lived with what he could not change.

After his injury, my father could not return to the construction work he was so good at. He lived with his wife and young son in Reidsville where he tried his hand at carpentry and furniture making, but he really wasn’t very good at it. Dad was offered a position as a football coach at his old high school, but first he had to complete his degree so he could teach an academic subject as well. So he enrolled in Elon College to study education and history. By that time, there was a second son. At the urging of a professor, Dad made the decision to go on to graduate school in history at the University of North Carolina, where he was named as one of the original Morehead scholars (although it is now an undergraduate program, the original scholars included graduate students).

While Dad was still completing his doctorate, he accepted a research position with the Colonial Williamsburg Foundation. It was in Williamsburg that a third son (yours truly) was born to the Rankin family. It was also there that Dad co-wrote what became one of the most highly regarded books about the American Revolution: Rebels and Redcoats.

We moved to New Orleans after my father was offered a faculty position at Tulane University. Over the course of 26 years, he established himself as an outstanding scholar and writer (he was designated as the W.R. Irby Professor of History), a beloved teacher (who was nicknamed “Big Daddy” by his graduate students), and a voice of reason who represented the academic faculty with the athletic department and vice versa.

He published prolifically (unfortunately at a time before historians like Stephen Ambrose made it financially profitable). The impact he had on his students and his peers was remarkable. The impact he had on his sons was profound.

Dad was physically unable to do so many of the little things that come with being a father: no carrying his son on his shoulders, no playing football on the lawn, no bike rides. But there are a thousand other memories I have: sitting on the Ferris wheel at Pontchartrain Beach Amusement Park with my father’s arm around me, the visits to his office, walking hand-in-hand to kindergarten, exploring historic sites in Virginia with the greatest of guides, watching football games on television, and a lot of fishing trips. Dad took joy in sharing his interests with me, and equal joy in sharing my interests. And sometimes we just shared a presence with each other, sitting silently on the porch of a beach house, watching the ocean waves.

I have come to the conclusion that one learns good parenting in two ways: having great parents, and having great children. It is my blessing to have had both great parents and great children, and the most important lessons from all of them have been much the same. Hopes and dreams ⎯ those you hold for yourself as well as those you hold for your children ⎯ are easily broken, so don’t stake too much on them. The good news is that hopes and dreams are replaceable. Together, parents and children can make lives better by moving forward together with open hearts and open minds.

Friday, June 09, 2006

AN INCONSISTENT VACCINE POLICY

The latest article by Dan Olmsted, entitled The Age of Autism: Gardasil vs. Hep B, highlights how our nation’s health-care policy sometimes is the product more of politics and economics than good sense. This time, Mr. Olmsted writes of last week’s approval of the Gardasil vaccine, designed to prevent the spread of human papillomavirus (“HPV”), a sexually transmitted disease that is believed to cause cervical cancer.

The Food and Drug Administration approved the new vaccine for use in girls who have reached nine years of age, and therein lies the point of the story. As Mr. Olmsted writes, “the decision to wait till the cusp of adolescence to give the shot seems sensible ⎯ and drives home the contrary approach that the CDC has taken with the hepatitis B vaccination mandated for every newborn child.”

Once again, Mr. Olmsted hits the bull’s eye.

If one accepts the need for a vaccine against HPV, there certainly seems to be no pressing reason to use it on children at an age they will not be involved in sexual activity. Likewise, Hep-B is spread primarily through unprotected sex and intravenous drug use. Yet the powers that be seem to believe it’s a good idea to inoculate every single child on day one, regardless of whether their parents have tested positive for the Hep-B virus.

Many observers and researchers believe a rapid increase in the prevalence of autism is noticeable around the time the Hep-B vaccine was introduced onto the schedule. Had we known then what I know now, my wife and I would not have allowed our infant son to receive the thimerosal-containing Hep-B vaccine in his first few hours of life. We would have gladly agreed to keep him away from unprotected sex and IV-drug use for a few years.

Even now when the Hep-B vaccine contains only “trace” amounts of thimerosal, is it really a good idea to inject any vaccine into a child whose immune system is not yet developed? Moreover, if we assume for the sake of discussion that thimerosal and vaccines have nothing whatsoever to do with autism, is there any good reason to risk a possible adverse reaction from a vaccine that isn’t necessary so early in life? Why do we need to immediately vaccinate against a risk a child will not encounter for a decade or more? Is it good sense, or is it politics and economics?

Thursday, June 08, 2006

WORRIES IN DELAWARE (AND ELSEWHERE)

An article in the Delaware Coast Press highlights a growing concern about providing services for adult autistics. It seems that not all autistics grow up to the rosiest of lives.

The mother of a 24 year-old autistic man, who is currently living at home, echoed the same worry so many of us have, “I’m not going to live always.”

Another parent spent a considerable time searching for an appropriate group home for his two autistic sons, but found the living conditions in available facilities to be deplorable. He wound up renting an apartment for his sons within walking distance of their jobs at a local supermarket.

The lack of appropriate services for children and adults alike is all part of what many call the Epidemic of Denial. Officials at the federal, state, and local levels are doing their best to avoid facing the fact that they have a real problem on their hands. And it’s only going to get worse. Here’s the part of the story that really caught my attention:

Warren Ellis, director of the division’s adult special populations program that serves 114 people with behavior problems, mostly autistic people, expects the need for services to rise as a larger population of autistic students grows up. But for now, more group homes for autistic people aren’t warranted.

“Not that many people over the years have been requesting residential services,” Ellis said.

That may change.

“There are clearly more people with autism who are needing services,” Ellis said, noting a statewide increase. “Most of those people are still in school.”

It should be noted that another official attributed the rise in the population of autistic adults to a variety of factors:

The population of adults with disabilities across Delaware has been growing, as those living here age and as retirees relocate to the region from other states and bring disabled children with them, according to Roy Lafontaine, deputy director of the Division of Developmental Disabilities Services, part of Delaware Department of Health and Social Services.

I was unaware that Delaware has become a haven for retirees, although I would certainly agree that the DelMarVa area is an inviting destination. Nevertheless, an influx of families from elsewhere cannot completely explain the increased burden on services. Indeed, Mr. Lafontaine mentioned the factor of autistic individuals already in the area aging.

It all begs the question of why there was less of a need for services for autistic adults in the past. It’s a question that many in other states are also asking.

In any event, parents in Delaware are starting to worry about housing, transportation, and personal services for their autistic sons and daughters. To the state’s credit, Delaware has been tracking numbers through its Department of Education, and is at least thinking about the future. But there’s no plan, and good intentions are not going to help families in need now.

With limited resources, the division must prioritize, focusing first on disabled people who most need homes, who are poor, who lack caregivers or have been orphaned. While federal laws mandate education for disabled children, no such provisions ensure specific care for disabled adults.

“Many parents feel that it should be an entitlement,” Ellis said of housing and services for autistic men and women. “Unfortunately, it’s not.”

We have all heard some pretty scary estimates of the lifetime cost for caring for an autistic individual. Undoubtedly, some individuals will require less in the way of services, and some will require more. The unfortunate truth, however, is that not all autistic children grow up with the ability to live a fully independent life.

For some families, physical recovery from autism is possible. For other families, though, that may not be an option. And some families do not even consider recovery or cure an option. The common thread for all families of autistic persons is that we face a heavy financial burden. When families are unable to bear that burden, our governments step in. It is time for society as a whole to take stock of this situation and decide just what is to be done. As the numbers increase, time is running out.Thanks to Teresa for pointing out this news item.

Monday, June 05, 2006

A LETTER TO DATELINE

Last night (June 4th), NBC’s Dateline aired a short segment on chelation as a potential treatment for thimerosal-induced autism. Although far from perfect, the piece was noteworthy for its overall balance.

Balance is something we’re not always used to seeing from a national media that is overly dependent on advertising revenue from the pharmaceutical industry. Along with the talking heads from the CDC and AAP telling us that we’re so wrong to believe we’re doing any good, however, NBC showed brief snippets of video evidence that recovery may be more than just a pipe dream (including a wonderful shot of Scott Shoemaker and his son who has come so far in so short a time).

Fifteen minutes (actually, a bit less) is too short a time to give a complete picture, but Dateline deserves a lot of credit for telling this story at all. Below is the text of an email my wife and I sent to NBC.

As the parents of an autistic child, we would like to thank NBC for presenting a fair and objective report concerning Dr. Jim Adams’ study of chelation. We are, quite frankly, not used to seeing such balance from the national media, and the staff of Dateline is to be commended for this report.

The possible connection between vaccines and autism is far too complex an issue to be presented in such a limited amount of time, and your failure to mention several key points is therefore understandable. That being said, the following should be noted.

First, although parent-driven advocacy groups are at the spearhead of the political debate, the scientific debate includes physicians and researchers on both sides. That is, the hypothesis of a connection between mercury and/or vaccines and autism has support within the scientific community.

Second, it oversimplifies the issue somewhat to focus on thimerosal as a direct cause. The fact is that ethylmercury not only causes direct neurological damage, but it can also harm immune systems in children to the point that there is an increased susceptibility to other environmental insults, including other heavy metals (such as lead) and even the attenuated live viruses found in vaccines that do not include thimerosal. It could be said that the immune system in these children is overwhelmed.

Third, chelation should not be viewed as a cure-all in itself, but rather as one part of a complete biomedical approach to autism. The decision to chelate can only be made after appropriate testing to ensure that metal toxicity is indeed a problem. Moreover, chelating heavy metals in a child whose immune system is unable to excrete the chelated metal from the body may not do the job. A complete approach takes into account the need for diet, supplementation of vitamins, minerals, enzymes, and probiotics, and the introduction of glutathione. Additional therapies may also be needed to attempt undoing any permanent damage imposed by the mercury or other heavy metals.

Fourth, our understanding is that Dr. Adams’ study uses only DMSA as a chelator. In fact, there are at least three different chelators (DMSA, DMPS, and EDTA) that are used with various delivery means. Also, many physicians are employing natural chelators in children. What is appropriate for one child may not be appropriate in another, which points to the need for further studies beyond the work Dr. Adams is doing.

As Dr. Adams implied in your report, it is perplexing why nobody has yet conducted the clinical trials so many parents want to see done. A related question is why those who dispute the connection refuse to perform any clinical or biological studies that might shed light on the possible causal connection. Instead, the Centers for Disease Control, the Institute of Medicine, and the American Academy of Pediatrics all rely on a handful of flawed epidemiological reports. The primary study on which they rest their case, and the only one they cite that actually looked at populations and exposures in the United States, was termed by its lead author as a “neutral” study, indicating that no conclusions could be drawn and more study was required. Somehow, our medical and scientific leaders have decided that “neutral” really means “negative.”

Finally, your report included a reference to chelation opponents bringing up the death of an autistic child as an argument against the procedure. What was not mentioned was that the tragedy in Pennsylvania occurred not because a child was being chelated, but rather because the wrong chelating agent was used. Instead of injecting the child with Calcium EDTA to chelate heavy metals, the treating physician, for reasons unknown, used Disodium EDTA, an agent designed specifically to chelate calcium. The result was hypocalcemia, which resulted in the loss of a young life. Although there are certainly many lessons to be taken from that incident, those lessons do not include an inherent danger of chelation performed according to appropriate protocols.

Again, we would like to extend our thanks to NBC, the staff of Dateline, and Dr. Jim Adams.

Sunday, June 04, 2006

ROLLING SNOWBALLS WITH FRIENDS

An early surprise at Autism One last week came courtesy of our Virginia friend, Mary. She has apparently decided this blog needs a good publicist, and Mary came to the conference armed with stickers and postcards bearing a new Injecting Sense logo (see above). There’s no reason to worry about such efforts going to my head. The one person who would not wear one of the stickers was my lovely wife.

It would take too long to give a lot of detail about what I heard from various speakers, and it would be impossible to relate everything that went on because there were five separate tracks being conducted simultaneously. I encourage anyone who has an interest in what was said to order individual presentations; some are available on DVD (the videos from the 2006 conference should be available soon) with all of the sessions being available on audio CD or MP3.

What I can do is give you some impressions I came away with. Keep in mind that the following is not intended to be a transcript. Again, the presentations are available. Also, there are a lot of fine presentations I saw that won’t get mentioned because the details would get lost in any retelling. What really interested me is the move toward common ground.

Mark Blaxil called science a “subversive process,” because the whole point is to take what went before and prove it wrong. Or, in the words of the ancient Greek, Thales, as quoted by Mr. Blaxil, “to bring surety is to bring ruin.” Rigor and scrutiny need to be applied to all science, but one must realize that our understanding of an issue can never be complete.

In her presentation devoted to explaining her proposed model for understanding autism, Dr. Martha Herbert echoed the resistance to change many scientists have. She asked the rhetorical question of should we believe what we see, or do we see what we believe? Those who cling to outmoded models will not see or believe the very real discoveries that are being made.

We are in the midst of a dynamic scientific process, in which we are learning more every day. And with each new discovery, we get closer to the truth.

Indeed, as Dr. Elizabeth Mumper stated, we’re now seeing an “integration of hypotheses.” More and more speakers were talking about the combined impact of various environmental insults, including mercury as a primary but not the only culrit, as causative factors for autism.

There seems to be no question ⎯ at least among the physicians and researchers who spoke at Autism One ⎯ that most autism results from a combination of genes and environment. Dr. Manuel Casanova, a neuropathologist, debunked the notion that the different brain structure we see in autistics (i.e., increased number of Purkinje cells and narrower minicolumns) appears to result from environmentally influenced genetics. As Dr. Anju Usman stated, genes cannot be altered, but the manner in which they are expressed is subject to change.

Dr. Usman spoke of having to take a complete look at the clinical picture of each child. Specifically, many children have not just mercury toxicity, but lead toxicity as well, and the synergy between mercury and lead gives rise to an exponential increase in the hazard. Even so, for children with impaired immune systems, heavy metals are just “the tip of the inceberg.”

Also looking beyond a simple indictment of thimerosal was Dan Olmsted, who gave a presentation together with David Kirby. Mr. Olmsted, the UPI editor who has given us the outstanding “Age of Autism” series, doesn’t attempt to answer any questions about causation. Instead, he does exactly what a good journalist always does; he asks intriguing questions. By looking at common environmental exposures in the earliest reported cases of autism, and recent diagnoses of autism among children involved in vaccine trials, Mr. Olmsted presents questions that may help lead us to the right answers.

Dr. Andrew Wakefield, the most controversial of all the key players in the autism world, gave a very interesting talk partially about studies that seem to replicate his controversial paper of several years ago linking the MMR vaccination and autism. He went beyond that issue, however, and speculated aloud about whether, though our vaccine programs, may have altered for the worse the means by which measles is transmitted. Again, this was not presented so much as a scientific study as it was what I would call preliminary speculation, but it is an idea worthy of exploration. For anyone who wants to criticize this notion without bothering to know what they’re criticizing, I would urge such a person to order the DVD or audio CD of this lecture. (Actually, Lisa Ackerman’s introduction of Dr. Wakefield, by itself, is probably worth the price of the DVD.)

On a policy note, Rick Rollens addressed the California numbers and, more importantly, the California response to those numbers. The California DSS numbers are undeniably controversial and subject to various interpretations. But a sensible look at them indicates that something is indeed going on, and Californians should be grateful that people like Mr. Rollens are there to see that society doesn’t simply bury its collective head in the sand.

It is an unfortunate fact of our life that the scientific and health-policy issues that concern us most are intertwined with politics. The keynote presentation, given by Robert Krakow, Jim Moody, and John Gilmore, entitled “A New Revolution ⎯ Empowering Parents,” focused on political action. And there is certainly much going on in that area. More and more parents are coming to the conclusion that good science and good heath policy will be buried unless we unite as a political force. Many states have either passed, or are considering legislation to ban thimerosal from vaccines or to expand health insurance benefits for autism. The Combating Autism Act is now working its way through Congress. To be sure, it is an imperfect piece of legislation. Nearly everyone can find problems with it, but the process by which it has come together is indeed encouraging. The various educational and advocacy groups have come together to compromise in order to move forward.

On both the scientific and political fronts, we are moving toward common ground. Listening to the presentations at Autism One, I thought about the image (undoubtedly the result of watching too many cartoons as a child) of a snowball rolling downhill. At first, there is just a tiny bit of snow rolling at a slow rate of speed, but more and more snow is added as the ball rolls downhill. As it picks up more speed and momentum, the ball continues to grow at a quicker pace with each roll.

One reason the snowballs are picking up speed and snow is that there are so many good people giving them a little push on the journey. I got to spend some great moments with many of them. Getting to know Scott and Angela Shoemaker better was a genuine treat. Speaking of treats, I will never forget seeing the glee in the Little Rankster’s face as the Nanstiels serenaded him with the “Spongebob Squarepants” theme. I had the pleasure of meeting countless people ⎯ too many to name here ⎯ I’ve gotten to know either through this blog or the EoH list. I had the chance to chat with Dan Olmsted and Craig Westover, two fine writers who have nothing to gain by taking a serious look at what we’re saying, and yet they’re interested in seeking the truth. A continuing resolve to seek the truth was expressed to me by Lujene Clark, who has no intention of backing away from the important work she began with her late husband, Alan.

I experienced a moment of great (almost sinful) pride upon hearing Bob Krakow echo my thoughts about the political struggle involved in finding the truth: that there’s a lot of us out here, we’re everywhere, and “we’re not going away any time soon!”

We’re not going away until we find the truth that shall free our children of the obstacles caused by autism. We’re not going away until we find out why our leaders decided it was a good idea to inject poison into our children. There is much that still divides us, but we’re not going away until we reach a consensus.

About Me

Civil comments are always welcome.
These posts are my opinions, and should be deemed as nothing but my opinions. Nothing herein should be used or relied upon as advice of a medical, legal, or technical matter.